New research on cyber governance of health data

2016-12-09

Digital technology creates both a chance and a pressure to use health data for research and commercial purposes. But this emerging ‘health cyberspace’ needs to be handled in a way that meets our social expectations on governance, security and privacy. And at the same time allows data to be used in ways that are beneficial to society. This is what a project supported by Nordforsk is setting out to do.

It is becoming both simple and efficient to assemble and use existing data for new purposes. But also to collect new data through IT tools such as smartphone health apps and self-reported data over the internet.

Data routinely collected in the clinical realm is already being used for research that serves public interest and sometimes access to that data is sold to private companies. We have seen controversial proposals for repurposing of data in Norway, Sweden, Iceland and the UK.

The project is led from the HELEX Centre at the University of Oxford, and carried out in collaboration with the University of Iceland, the University of Oslo and the Centre for Research Ethics & Bioethics (CRB) at Uppsala University. Deborah Mascalzoni and Jorien Veldwijk from CRB will co-ordinate the empirical work. According to them, it is important to find solutions for this cyber governance that are both practical, and fit the expectations, needs and preferences of all stakeholders. They expect this project to produce results that can provide a solid basis for policy development.